RH Newly Diagnosed but probably had it forever

I had a one hour consult with my new endocrinologist (first since I moved back to UK) on Friday and was told I have RH. I have been having some strange 'turns' where I feel light headed, sometimes nauseous, spaced out, can't focus etc. I had put it down to low cortisol (I have Addison's Disease) and have been taking extra Hydrocortisone. I have been having these 'turns' since I returned to UK and have become more active, walk a lot more and weight train at gym. I had a 'turn' recently in Asda and had not long had my HC so I ate two thirds of a packet of sweets and within 10 mins felt significantly better. I had had coffee and cake about 2 hours beforehand, not my normal lunch but we had returned from holiday and stopped off en route. From as long as I can remember I've had a fear of being hungry because of how ill I feel when I go without food for more than about 3 hours, except I can go without breakfast and feel perfectly fine.

So I was sent off yesterday, having my HC reduced from 30mg to 20mg a day as he said I am on too much for my weight. Was also told to lose weight and come back in 12 weeks. He seemed to think the weight loss would fix me (if only). Interestingly when I test my sugars they are never really low, usually in low 5's. Lowest meter reading I ever had was 3.9 and I didn't have any hypo symptoms. Weird. My Hba1c is 41, I am GAD positive and also have Hashi's. I asked if RH can be a precursor to diabetes and he said yes. If my Hba1c doesn't come down with weight loss then I am LADA.

So yesterday I reduced my HC and ate fairly low carb and didn't feel too bad, but today I feel absolutely *****. It's very hard having Addisons as well as RH as it's difficult to determine what symptoms are caused by what condition. I am feeling really fuzzy in the head, nauseous and a bit disorientated.

Today I have eaten:

0930 Carbzone Low Carb Granola, 1/2 small apple, seed mix & Alpro soy milk
1115 Hard Boiled Egg, followed by 20 mins weight training
1315 Half a Trek low carb protein bar
1345 Sandwich with HiLo bread, avocado, bacon, lettuce & tomato

When you adopt a lower carb diet, does it take a while to feel better? Yesterday I felt much better but I didn't do any exercise. I have also been having bad sugar cravings and when I give into them, I binge on all kinds of processed sweet stuff. The other day I had a whole bag of fudge, a Turkish delight, a Daime bar and half a bag of dolly mixtures. An hour later my BS was 4.8. Please don't judge … I've had these bad sugar cravings/binges for about 2 years now.

I need to know I will start to feel better as at the moment I feel decidedly awful :

Brunneria said:

Hi again @Lesleywo and welcome back!

Forgive me not remembering, are you vegetarian?
My first reaction is that protein and fat will ease your transition into low carb. It can be a rocky landing. Maybe read up on low carb flu, which is a silly name for what happens to your body when it learns to switch from high carb to low, and fat as fuel.

And don’t worry. i have NO INTENTION of judging you for eating carb stuff.
My experience of RH carb cravings is that they are powerful and overrule logical thought.
My technique to avoid them is to make sure I don’t eat carbs (and therefore avoid the hi/lo rollercoaster, and to make sure I eat plenty of fat and protein, because them kill the cravings.

Hope that helps.
And commiserations on the RH diagnosis.

Click to expand...

Thanks Brunneria ... not veggie but not a great meat lover either!

Bluetit1802 said:

Hi @Lesleywo

Which tests did the endo give you to diagnose RH?

I just had a look at your profile, which still has you living in Australia!

Click to expand...

Hi Bluetit

I didn't have any specific RH tests, other than Hbalc. He based his diagnosis on my symptoms and the fact that I felt better after eating the sweets and how my sugars aren't very high after ingesting huge quantities of sugar (I 'fessed up about the sugar binges). He said even though my readings aren't low it's the body reacting to the surge insulin.

I've been waiting 6 months to see him and hoped is feel better ... but I feel worse!

Lamont D said:

Hi @Lesleywo

You have an awful lot going on, too much in fact, with the different conditions.
The one thing that I can recommend is to go low carb and avoid the food that is causing your symptoms. It has already come across that you do feel better already, even though you have just started.
I do know what those cravings are like, but, as Brun has said, protein and fats, is better than feasting on those oh so nice sweet things! Temptation is cruel!

If you do have RH, exercise can be a minefield, too much and you get liver dump, too little and you don't get the rewards, that is why I do a lot of walking, walking for fifteen minutes, fifteen minutes after a meal is a great way to keep control. Walking is good for blood glucose levels. Fasting is usually good for RH ers, because not having the response and reactive part of eating, gives your body time to reduce insulin levels,. The fast will not make you hypo if you have just RH, but with the other conditions, I don't know. This is something you can ask.
Insulin, and if you have RH, will probably be the reason and cause for your weight issues, continuous blood sugar levels in near normal range is the best treatment for lowering your background insulin and not having the insulin response known as an overshoot, which causes the hypos.

I have to wonder why you have not had the requisite tests for RH, even though your symptoms are similar, it might not be. Or what type of hypoglycaemia you have, there is not just RH!

I also fear that, because of the symptoms, that, it may be asymptomatic of your other conditions. Until the tests are done, you won't know.

Having a hba1c levels that is in normal levels is really great and keeping to a very low carb diet will help with all your conditions regardless, I just hope that your endocrinologist, can get around to a true diagnosis.


Best wishes

Click to expand...

Thanks @LamontD for your reply. Yes i am finding the exercise bit a problem. Can you recommend a before and after snack? I usually do my weight training, then eat a boiled egg or a few nuts with a coffee and my meds, then walk home (30mins).

Yes I really don't enjoy breakfast much and could happily go without. As it is I rarely eat before 9.30 or 10am.

Can you give me an example of a day's food intake for you, e.g how often, how much etc.

Many thanks

Lamont D said:

Hi, again,
I have always had trouble with weight training, finding it doesn't help with control, and also my work is about lifting and carrying, but I know when I've done too much.
I would advise to try a fast before exercise, to see if that suits your exercise program.
I think you are in the presumption you need food to cover the energy used during exercise, when in ketosis, or doing very low carb, your energy doesn't come from the the food.
I tend to avoid snacks as much as possible.
However, today, being off work, I fast till three pm, then have a couple of low-carb meals. First one was gammon, egg, mushrooms tomatoes and onions. Second will be a small salad, probably gammon again! And maybe as a treat some yoghurt before bed, with strawberries.
If I was in work tomorrow, I usually start with a few spoonfuls of yogurt, some fruit.
Next meal would depend on time, the chef at work usually has salad or boiled egg or some cooked chicken on hand. But I have been known to miss food until the evening.
When I have some pork chops or something similar, as I love pork.
Being lactose intolerant doesn't help, but tend to eat a lot of protein and salad vegetables. I don't like to use factory food, I cook from fresh. I also like curry and some soup as an alternative meal.
Again, however, I don't stick to rigid meal times, I please myself when and what I eat.
There are some great ideas and recipes on the low carb forum.
If I had the time to cook and prepare more complex meals, I would, but I'm happy with my lifestyle, it works!
I don't miss carbs, why would I?
They make me ill!
You will learn that being careful with what you put in your mouth, can and will either make you healthy or feeling awful and being ill!
I have made my choice!

Click to expand...

Thanks for the info. I must admit I thought your food would have been little and often .. it's funny as I always went to the gym before breakfast in Australia but have been going around 11am over here. So I will go earlier tomorrow on an empty stomach and see if I feel better and report back